Reporting on children affected by HIV raises particular ethical issues, around the right to privacy, consent, and stigmatisation or other negative repercussions.

The United Nations Children’s Fund (UNICEF)’s Ethical Guidelines: Principles for ethical reporting on children state: “Do not further stigmatise any child, avoid categorisations or descriptions that expose a child to negative reprisals – including additional physical or psychological harm, or to lifelong abuse, discrimination or rejection by their local communities.” More specifically, UNICEF advise, “Always change the name and obscure the visual identity of any child who is identified as …HIV positive, or living with AIDS, unless the child, a parent, or a guardian gives fully informed consent”.

The International Federation of Journalists’ (IFJ) Children’s Rights and Media: Guidelines and Principles for Reporting on Issues Involving Children also stress the importance of journalists considering the consequences of publications concerning children and of minimising harm.

Media Monitoring Africa (MMA)’s position is that a child’s HIV status must remain confidential unless the child him/herself wants to reveal his/her status, and has provided informed consent. Informed consent is understood to mean that the decision to disclose is made after having been made aware of the potential consequences of the disclosure. Furthermore, even where the caregiver has provided consent, “unless it is demonstrably in the best interests of the child, and unless the child him/herself consents, the child’s HIV status should not be revealed” (MMP et al 2005:24 ²).

The Southern Africa Editor’s Forum (SAEF) Guiding Principles for Ethical Reporting on HIV and AIDS & Gender  specify:

“Particular care should be taken in dealing with children. They experience the most extreme consequences of the epidemic, and their rights to privacy should be afforded even greater protection. They should only be identified if the public interest is overwhelming, and then only if no harm to them is foreseeable and they and any parents or guardians have given informed consent.”

The Editorial Guidelines and Principles for reporting on children in the media, recommended by the South African Editors Forum (SANEF), and adopted by The Star, specify: “To prevent harm and possible stigmatisation, a child’s HIV status will not be revealed, unless there are exceptional circumstances and informed consent from both the child and caregiver/parent has been attained. If in doubt, this information shall be left out.”

In first instance of identification, while the HIV status of the child may have been disclosed before through the extensive media coverage, newspapers and news agencies still have the responsibility to protect the child’s best interest, including his/her right to privacy and dignity, by for example, not re-disclosing or insinuating the child’s HIV-positive status. It should also be noted that, “Just because a child’s name has already been reported is not an iron-clad reason to continue reporting the name.” (MMP and IAJ 2005: 26 ³).

In second instance of identification, it is not clear from the article or caption whether informed consent was granted by the mother of the child. However, even if it was, the question of the child’s consent and whether it would be in the child’s best interest still stands. In this case, the child appears too young to provide informed consent about disclosing their status and dealing with any possible stigma.

There are ways of telling the stories of children affected by HIV without revealing their identities, which avoid subjecting children to repercussions including victimisation and the stigma.

In deciding whether a child’s identity should be revealed, the Editorial Guidelines and those contained in A Resource Kit for Journalists guide journalists to ask themselves the following questions: Why does the public need to know the child’s identity? What harm could occur if you name the child? What would identifying the child allow the journalist to tell the audience that they could not understand otherwise?

It is not clear what purpose is served by article’s identification of the children who are both apparently affected by HIV.

City Press also reported on HIV in the article “Grant us our daily bread” (06/09/2009, p.27) by S’Thembiso Hlongwane, with photographs by Lucky Nxumalo. The article focused on children and government support grants, using a case study of a 12-year old girl who lives with her three brothers and undertook the role of head of household when her parents passed away. This article, however, provided pseudonyms for the 12-year old and her brothers and concealed their identities in the accompanying pictures. The newspaper reporters and editor should be commended for reporting on HIV and the effects it has on children, while also protecting the children’s identities.

Reporting on HIV and AIDS requires sensitivity and realising the importance of protecting children’s rights to privacy and dignity. Our government and society at large need to be aware of the enormous impact HIV and AIDS has on children, but this should not be done at the risk of violating their rights. The principles of confidentiality and the rights to choose remain important, if not more so, where children are concerned, and particularly where the media is involved. While the article was not written by The Star’s own reporters, this does not diminish The Star editorial responsibilities concerning reporting on children. Media Monitoring Africa urges The Star and E-Health News Service to consider these principles and guidelines and apply them to future reporting.

Footnotes

¹Ordinarily, MMA would conceal any details that would identify the children who are HIV-positive. However, as both the children are no longer alive, and following dialogue with the reporter, MMA have decided not to conceal their identities.

² MMP, CI, CSSR, Wits. 2005. Reporting on children in the context of HIV/AIDS: A journalist’s resource. MMP, CI, CSSR, Wits: Johannesburg.

³ Media Monitoring Project (MMP) and Institute for the Advancement of Journalism (IAJ). 2005. A Resource Kit for Journalists: Children’s Media Mentoring Project. MMP and IAJ: Johannesburg.

Editor’s Note: Both The Star and Anso Thom, the reporter, were sent the commentary by email and given the opportunity to respond. The Star did not respond, but a series of emails were exchanged with Anso Thom. See below.

Response 1 from Anso Thom:

I think the service you are offering is valuable and long overdue.

I think upon further investigation you will find that Health-e has an impeccable record when it comes to defending the rights of children. We have had privileged access to many forums where children’s stories are highlighted by the children themselves and we have managed to treat it with respect and dignity.

I think unless you understand the background and context to each case your feedback is subjective and not well informed.

Thapelo’s case has been highlighted in the media on several occasions and with his full knowledge as well as that of his caregiver. Thapelo has been part of the process all along and I would like to understand (after reading your feedback) why you think he did not give his informed consent? Perhaps I can give you more information on his specific case if you wish.

We have in fact had cases where people have given their permission to be identified and we have advised them otherwise.

As for the photograph, I cannot vouch for it as I have not seen it. The Star was responsible for the photographs and if I was present when these pictures were taken I would have ensured that the mother involved gives her informed consent.

I think one has to guard against further entrenching stigma, but that’s just an aside.

Perhaps we can discuss this further if you wish, especially if you are telling me that children are not allowed to be identified at all.

I can assure you that our work is also informed by a human rights approach and on this story we worked very closely with Adila Hassim and Mark Heywood of the AIDS Law Project who both saw the story before it was published.

Response 2 from Anso Thom:

I also omitted one other detail. We do have written consent from the mother/caregiver [in the case of the six year old boy].

The Star may wish to respond on the picture, if you could please indicate in our article that it is a separate issue.

Response 1 from MMA

Thank you so much for your response. I have had a look at the Health-e News Service, and can see that you are doing great work.

I just want to clarify (in response to your question) that we did not comment or make judgment on whether Thapelo and/or his mother had provided informed consent.

Also, when you say “The Star may wish to respond on the picture, if you could please indicate in our article that it is a separate issue.”, do you mean you would like us to make it clear that you did not provide it, but The Star did?

Looking forward to further discussions.

Response 3 from Anso Thom:

The situation with the Free State trip was that The Star sent a photographer along who stayed on for a couple of days so I am not sure what picture he took. Our policy is that we will not allow any pics to be taken without very clear consent from the people involved. I am sure he would have done so. But I have not seen the pic and have no idea if it is an archive pic or whether he actually took it while in the FS. Is it possible for you to send me a scanned copy of the article/pic

However, it would be best for The Star to comment on the details surrounding the pic?
We are open to criticism and we are always happy to learn, but we are always so incredibly careful with all these matters….I just think matters are not always as clear cut as they seem and we may have to engage around each article/case.

[Photo sent]

Response 4 from Anso Thom:

Thanks for the photo, I now know which pics were used. We did interview Maria and several other mothers. I know the photographer spent the day with Maria once I had left. I do also know we spoke at great length with Maria and asked her whether she understood the implications of being identified, etc. She was very clear and adamant that she had no problem. I told her very clearly that there was no pressure whatsoever for her to be identified and that her story could still be told. However, she wanted her name to be used. It’s sometimes a very fine line between trying to discourage people from being identified and respecting their wish to do the opposite. The problem is we could be sending them a message that they do have something to hide and that they need to be ashamed, which is not the case.

As an aside, I actually spent the remainder of that day trying to get a paediatrician to see the baby, who had severe thrush and was underweight. We did manage to get her seen to as we knew one of the doctors, they did prescribe meds and asked her to return a couple of days later so the baby could be assessed for ARVs. The baby has since died.

Response 2 from MMA:

What is clear from your response, and the work that you and Health-e News does, is that you share with us a human right’s approach to the media’s role and practice, particularly in relation to issues such as HIV and AIDS, which affect children. We clearly share common ground in our concern for the best interests of children.

What comes out of our exchange, and which was highlighted in the commentary, was that there are a number of different positions and interpretations on reporting on children affected by HIV and AIDS, in terms of when it is acceptable and/or appropriate to mention an identified child’s HIV-positive status in the media. All place importance of considering the consequences, for the child, and minimizing harm, but there appears to be variation on the issue of consent, in terms of who must consent, and whether consent alone is enough.

This exchange offers an excellent opportunity for us to find our common ground and to learn and develop.

You clarified in your responses that there was informed consent from the mothers, in both cases, to identify the children and disclose their HIV-positive status in the media.

In relation to consent, MMA’s position is that the child him/herself must provide informed consent, even where the guardian has done so, and it must be demonstrably in the best interests of the child. This is a similar position adopted by the Southern African Editors Forum guidelines (referred to in the commentary), which also specifies the need for the child’s consent.

Our position comes from a children’s rights perspective, which supports children’s rights to express their views and have their views taken into account in matters concerning them.

As you say in your response,  when we comment on media’s reporting on children, we do not know all of the circumstances, and we can only go with what information is made available, and any response received from the media themselves.

You have made it very clear in your response that you worked closely with the Aids Law Project on your story. MMA advocates that where vulnerable children are involved, it is best for reporters to access them through child support organisations, to ensure that they receive the appropriate level of support, are able to make informed choices, and that their best interests are protected throughout.

There is a danger, where the circumstances which inform the decision are not made clear, that other reporters may see identification and disclosure as acceptable practice. It is on the basis of the information available that both MMA and other reporters make decisions and judgments.

In the case of the six-year old, if he were being supported by the Aids Law Project, it is more likely that he is made fully aware of the consequences of disclosure to the media and that this was demonstrably in his best interests. In his case, it could have assisted him to get the ARV treatment that he needed.

It is also important to add, however, that there are times where even organisations set up to care for children or promote children’s welfare, such as those looking after children affected by HIV, at times appear to fail to protect individual children’s right to privacy and protection from stigma, in the interests of generating funding or publicity.

We agree that all members of society, including the media, has a role to play in challenging the stigma attached to HIV and AIDS, but maintain that the decision should rest with the child as to whether his/her status should be revealed.

The case of the mother and baby who were unable to access treatment, identified in the photograph, and the details you provided, present a strong case for identification and disclosure of the baby’s HIV status, even where the child (baby) was not in the position to consent. Similarly to the case of the six-year old, it may serve to facilitate the babies’ access to ARVs, and therefore is demonstrably in his best interest.

We maintain that each decision that affects children, including the decision to disclose an identified child’s HIV status, should be made on a case by case basis, driven by the best interests of the child.

There is a need to ensure that disclosing children’s HIV-positive status in the media is not treated as common practice, but rather only done in exceptional cases, with the onus on the (demonstrably) best interests of the child, and informed consent. Where the child is unable to provide this, and decisions are made on his/her behalf, there is even greater onus on demonstrating that the best interests of the child are served by disclosure.